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About POTSius

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  1. My experiences with eye achiness and head muscle achiness is quite similar. Quite debilitating symptoms. For the head achiness, I have found self-massaging the achey muscles has helped tremendously. Multiple times a day, but massaging each place only 10 seconds or so. In my experience this takes some time to work, days to weeks. Specifically all over the temporalis, frontalis, occipitalis, even some muscles in area right behind ears. This is just my experience though. I find the eye achiness gets worse with allergies. I find reading small print is particularly bad, and I have my
  2. Maybe it is the sternocleidomastoid muscle When you say under your jaw, do you mean at the side of your head? or more towards where the adams apple is located. Sternocleidomastoid I think runs more to the side. I have had possibly similar issues. Massaging it helps me, but you want to be careful as there is a lot of "stuff" around there like blood vessels.
  3. I find heating my core, with an electric heat pad, helps (even though it is my legs that are often shaking) (I don't feel cold, but the heat still helps) Also, I find that the muscles that are shaking are often quite sore and if I massage them the shaking improves. The massaging can take a bit of time to work. Also it seems to need repetition. So I might massage 15seconds, and 5m later do the same, etc etc.
  4. I would love to know more about less common treatments. Maybe things that work really really well but for a minority of patients.
  5. For me muscular overuse triggers symptoms, so I only massage like 30 seconds at a time as the massaging itself can be quite straining, but I do it a lot over the course of the day, like a dozen times or so. That actually seems to work! I don't know the specifics of your other health problems but maybe that is helpful info
  6. @POTSAly Are you 100% sure it is pressure inside your head? Maybe it is muscle tension in the muscles around your head and neck? I used to get bad headaches until I started to massage my temples, as I describe in the following post.
  7. I have tried prazosin (an alpha 1 blocker) It helped with my normally very cold hands and I think I felt a little better overall But I had worse GI symptoms and fatigue (maybe due to the GI symptoms?) Another thing to note is that, at least for me, when I discontinued the prazosin I had some mild "withdrawal" effects, or maybe just a coincidental flare up in symptoms.
  8. Here is a study that supports the use of oral rehydration solution (ORS) in POTS https://pubmed.ncbi.nlm.nih.gov/31405524/
  9. @Sarah Tee That is great that this is helping You should look into oral rehydration solutions, you can buy or make They have water and salt but also sugar and other stuff to help it be even better absorbed, or something like that. Maybe it would help more?
  10. @dancer65 Thanks for all the advice. I am young so I think that must be it. Good to know it is something that might tighten later. Can definitely feel that last stretch for the neck!
  11. @dancer65 Thanks for the advice, I looked up False Cardialgia and it sounded like an interesting idea. As I noted above, it really did feel like the pain was heart palpitations. I tried the stretch and I found a lot of soreness in whatever muscles pull the shoulder blades together, maybe that is what I need to work on next. I will have to try further for the pecs, as I could not get a stretch feeling there doing this.
  12. I get something similar when in a particularly bad flare up I find heating my core helps (even though it is my legs that are often shaking) I use an electric heat pad I also don't feel cold, but the heat still helps I find that the muscles that are shaking are sore and if I massage them the shaking improves
  13. Thanks @Pistol I am extra happy as it did not involve adding yet another med!
  14. I wanted to share that I have had great improvement with two longstanding and debilitating chest pain symptoms via self massage! the symptoms were: 1. a bad pain in the center of my chest 2. a fluttering sort of sensation in my chest I massage the muscles between the ribs (which I did not even know existed! they are used for breathing) and also right at the junction of the ribs and the sternum (center of chest). I massage these areas only for maybe 30 seconds at a time, but like a dozen times a day. I hypothesize the key here is repetition. I search for sore regions and mass
  15. I have hyperadrenergic POTS and feel strong emotion in general can trigger similar symptoms Watching a tense sports game, playing cards, tense or suspenseful books/tv I attribute it to an excessive sympathetic nervous system response All of these things should lead to some sort of response in a normal person, people like us just get an excessive response Clonidine/beta blockers seem to help for me In short, I think it is not a separate disease, just part of some peoples hyperadrenergic POTS (or other dysautonomia)
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